I have been prescribed COLESTYRAMINE (QUESTRAN LIGHT) for Bile Acid Mall Absorption (BAM) but I am allergic to the ingredient: Aspartame as it gives me chronic migraines. There is another medication called COLESTIPOL but one of the side effects is headache/migraine. Also there is another newer, more easily tolerated medication called : COLESEVELAM but I don't think it is licensed here in the UK. Is there anybody who is taking either Colestipol or Colesevelam who are able to help me as I don't know anybody else who takes this medication. I would be really interested to know how well these medications are tollerated and how you got on with them. Hope somebody is able to help. Many thanks.

27 Replies

Having had a diagnosis of IBS for twenty years, I've just been told it's BAM. I have been on colesevalm for the last three weeks, starting with one a day now on three a day.

I have no side effects from the tablets, the only difficulty is that you can't take other medication 4 hours before and 4 hours after the tablet. I try and space the three tablets out during the day, setting an alarm for four hours every time I take one.

I have to have blood tests to check my vitamin levels as they also absorb vitamins along with the bile.

Thanks very much for your reply. It does sound quite difficult if you need t take other medication and you have to work around the 8 hour period before and after taking Colesevalm. I am pleased it's working for you, must be such a relief.

I'm on Colesevelam in Berkshire. It's licensed as a cholesterol medication but Gastro Consiltant prescribed for BAM.

Works quite well but you have to take it 20mins before food for it to work... That can be a pain if you don't know when yore going to eat. If you don't take it far enough In advance there's no effect and I run to the loo anyways.

Plus you can't take other meds at the same times of day as Colesevelam as it may bind them too.

Lastly, play with dosage until you get it right and it stops the runs. It's not absorbed by the body. Too much of the stuff makes you constipated that's all.

It was the pharmacist and the consultant that said to leave the four hour gaps as it absorbs the medication. I don't worry about paracetamol but I am very strict with the times when it's prescribed medication that I need to keep me well.

Interesting to read about taking it with food as I asked my consultant yeasterday about this and he checked in his drug book and said I didn't need to take it with food.

I have just looked up Julian Walters and he has an email address so I can contact him if I need to. He's obviously a leading expert into BAM which is useful. I do have very high cholesterol so I am wondering if that's why I am (probably) suffering from BAM. Perhaps the cholesterol is causing the problem. My gastroenterologist is only guessing as I cannot have the SeHCAT SCAN done due to not being able to take the radioactive pill for the scan but he's going to treat me for BAM and see if it works. Thanks again Kirstie for very helpful information.

Hi I was diagnosed with bile acid a couple of years ago after many years of going to the doctors and them just telling me it was just ibs but I was around 19 years old and thinking this ain't right as all these problems started after having my gallbladder out. I then discovered this site and thanks to some users who have simular condition they said it might be bile acid so I then went to my doctors and mention it to them and then was diagnosed with it. I take Questran colestyramine and it works wonders and it's all thanks to this site that I am now on the right medication. I start work at 7am most mornings and work in retail so really couldn't be running off to the toilet every 5 minutes. I take my sachet at around 6 am and that lasts me throughout the day and even then I go like a normal person would. I do still have my off days depending on what I have eaten but I have got to know what I can and can't eat. I do also get a lot of headaches and feel tired a lot of the time but I would take that over running off to the toilet here and there. I am now nearly 30 and if I don't take it then I get a lot of pain and then have to run off. But I am so thankful I have questran and this site to share stories with as I felt so down by it all and was taking over my life in the sense I couldn't really go out anywhere. Wishing you all the luck in getting what is right for you.

Thank you for taking the time to reply. I am so pleased to hear that through this site you discovered about Bile Acid Mall Asorption and have managed to get the right medication to help you with your problems. I have also discovered a huge amount through this site as well, it's been such a blessing, what would we do without it I wonder. You are very young to have had so many problems and having a very unpredictable stomach is certainly no joke. I have also been prescribed Questran Light Colestryramine 4 gram sachets. They contain Aspartame which gives me migraines and can cause headaches (I wonder if the Aspartame (Orange juice flavour) could be giving you a headache). Through this site I have discovered there is another medication called Colesevelam which could be easier to tolerate so I am going to ask my GP if I can have this one. I have not been able to go out very far at all unless I have taken Immodium and that doesn't always work also I feel very drained a lot of the time. Many thanks again for getting in touch, I am hoping this medication will work as well for me as it does for you.

May you continue to stay well and so pleased you are leading a normal life again.

I discovered many years ago that Aspartame can trigger migraines and headaches and may be the cause of many medical problems but this substance seems to pass all the regulations as safe and is therefore pumped into so many drinks and also medication which is frightening. I am sure many people are taking medication containing Aspartame and suffering horrible side effects but not understanding why. The medical profession do not seem to have a grip on this problem or even understand the complications of using this substance. It is big business now and nothing will change. I just hope perhaps me mentioning this might alert somebody who may be effected in some way if they have mystery problems especially headaches/migraine that if you are taking Aspartame in any form it could be causing you problems.

Hi I'm on colesevelam for BAM and IBS D I take 2 a day and it seems to work for me ive been told to take more if necessary up to 7 a day you get mucus in your stools where it binds the Bile Salts. I take other meds 3 hours after taking colesevelam and it seems ok ive been told you can take them all at once but I wouldn't know check with a GP good luck Mick

Thank you so much for replying about Colesevelam for BAM. I'm pleased it is working for you. Do you get any side effects from the medication, eg. headaches? Is the Colesevelam in sachets you drink or tablet form? It's interesting to hear from others who are taking it. I hope you don't mind me asking more questions.

I don't suffer with headaches as a side effect of the med I wouldn't notice any of the other side effects as I have bloating cramps and diarrhoea because of my IBS anyway I take colesevelam as tablet form 625mg 2 once a day, I read up about the colesevelam aand its license in the uk and it stated that although you were covered for liability for the taking the med for BAM there was no liability for any other condition it was being used to treat, I don't mind you asking as personal experiences are honest and true advice

Hi Mick2561, Many thanks for your prompt reply. I am going to ask for Colesevelam in tablet form the same as you are taking and hope that it works for me too. Somebody else on this site talked about this medication and said they thought it could be easier to tolerate. I have looked up the ingredients of other BAM medications and all the sachets you have to mix with drinks contains Aspartame or flavourings which I cannot take. I am just off to see my GP so hope he will agree to me having this medication. This site is invaluable, thanks so much for letting me helping me, much appreciated.

Hi again Mick2561, I've just got back from seeing my GP and he cannot prescribe the Colesevelam in tablet form as it is too expensive (over £90) and the NHS has put a double red flag against it. (I live in the UK). All he could suggest is that I buy it from America on the internet. My GP is a lovely chap and so helpful but he said there is nothing he could do. So looks like I will be having to purchase it from the USA and also probably having to pay a tax to get it through customs. Now going to have a look around on the internet to see what I can find.

I live in the uk also that's shocking that you cant have it partly because of cost, all the red flags will be is because of the license warning, have you got a gastro consultant that you could get to prescribe it for you then your doctor has no other option to give it to you. be careful where you buy from not just for the quality of the drug but also import rules are different for many countries good luck again mick

I am wondering if it's the "post code lottery" effect that will not allow me to have the Colesevelam. I will get another appointment to see my gastro consultant so will discuss it with him when I see him but it won't be for some time. I have just contacted an online pharmacy (Pharmacy 2U) here in the UK and they can prescribe it if I get a prescription from my GP and then I pay for it. It will cost about £120 for 180 tablets. It will be safer and cheaper than going to USA. I am a bit concerned about getting my gastroenterologist to force the issue as I don't want to upset my GP if he's just said no. They are really good to me at my surgery and help me with my allergies to coloured pills etc. so I don't feel I can cause too much of a fuss. I'm in between a rock and a hard place. I may buy the first lot and see if they suit me and then go on from there. Thanks for all your time and help. Very much appreciated, very kind of you.

I know what you mean about being stuck between a rock and a hard place and not wanting to upset your doctor, but surely your health comes first, and why should you be denied medication based on cost ?, £120 is a lot of money to pay for a course of tablets considering we all pay towards the NHS, I would still speak to your gastro about him prescribing it to try then if he feels the need for you to take it and it works for you then why should your GP be counting the pennies on behalf of the NHS ?, good luck I hope you get a positive result

Like some others here I had been labelled with IBS-D for years and nothing helped. I then read about Bile Acid Malabsorption (also had my gall bladder removed) and the consultant finally confirmed a diagnosis for this. I started on the sachets but could not tolerate them so was prescribed Cholestagel tablets (3 tabs twice a day) and the difference has been incredible. I live in Scotland where prescriptions are free but my GP had to get permission to provide these given the cost. Fortunately for me they agreed without any problem and I have now taken them for almost a year. I can't begin to tell you the difference they have made. I sometimes have one bad day a week but in comparison to what I was like before I can easily cope with that. You can't put a price on your health and I think it is despicable if you can't get what you need because of where you live. For the difference it has made to my life I would pay if I had to but that is supposedly why we have an NHS so please persevere. I hope they help.

Hi Looby49, Thank you for getting in touch. I am very pleased to hear you have finally been diagnosed and the Cholestagel (Colesevelam) tablets are working for you, it must be such a relief to get your life back under control again.

I was going to pay for the prescription just to see how this medication worked for me but before going ahead with it, I decided to go gluten free for a few weeks to see if it made any difference. Thankfully, at the moment, I have found a vast improvement and the constant eruption of my stomach seems to have settled down. I am eating very bland food, eggs, chicken, toast, potatoes and peas. It's pretty boring but I am hoping it might be the answer to my problems. Also a few weeks ago I did have two weeks of antibiotics which may have also helped to calm things down, it could have been an infection, I shall never know.

It is pretty disgusting that the NHS will not fund Colesevelam for me especially when I am allergic to the Colestyramine Sachets. If I do have to resort to buying my medication I think I will contact our Primary Care Trust and take it up with them. After all, we have paid into the NHS all our lives. Just keeping my fingers crossed that staying gluten free will keep working for me. Good luck and hope you continue to stay well.